Primary caregivers experiences of raising a child with Cerebral Palsy

Children with cerebral palsy (CP) have long term care requirements that often exceed the usual needs of typical children. Because of this, they are dependent on parents (most frequently mothers) for daily assistance.

Around two children from every 1,000 babies born will develop CP and around 8000-10000 infants will be diagnosed each year (Oskoui et al, 2013). In Aotearoa New Zealand (NZ), based on this 2/1000 ratio and the Ministry of Health (MOH) population data, this equates to 2490 children in Aotearoa NZ aged 19 years and under living with CP and an estimated 150 new cases being diagnosed in NZ each year. This represents a significant number of children requiring support. The national literature studying parents of disabled children and the international literature studying parents of children with CP reveals both these groups are stressed and stretched (Smith & Blamires, 2022). Replicating similar research will add to our understanding of these experiences within the Aotearoa NZ context.

This doctoral study aims to explore the experiences and perspectives of primary caregivers raising a school aged child with Cerebral Palsy in Aotearoa NZ?

Potential significance

This proposed research will increase the body of knowledge surrounding the experience of primary caregivers within the Aotearoa NZ context. Through understanding this experience there is potential to positively impact the health outcomes and quality of life of primary caregivers and children living with CP.

Findings

  • Smith, M., & Blamires, J. (2022). Mothers' experience of having a child with cerebral palsy. A systematic review. Journal of Pediatric Nursing, 64, 64–73. https://doi.org/10.1016/j.pedn.2022.01.014
  • Smith, M., Blamires, J., & Foster, M. (2022). The impact of policies and legislation on the structure and delivery of support services for children with cerebral palsy and their families in Aotearoa New Zealand: A professional perspective. Nursing Praxis in Aotearoa New Zealand. https://doi.org/10.36951/001c.38925
  • Oskoui, M., Coutinho, F., Dykeman, J., Jette, N., & Pringsheim, T. (2013). An update on the prevalence of cerebral palsy: a systematic review and meta‐analysis. Developmental Medicine & Child Neurology, 55(6), 509-519. https://onlinelibrary.wiley.com/doi/full/10.1111/dmcn.12080

Quick facts

Doctoral Project Lead:

  • Meg Smith

Supervisory Team: